DF end of life hospice trauma

[Blackisthecolour]

My DDad is currently in a hospice for care after having cancer for a long time. He has declined rapidly since he was admitted 2 weeks ago and although he has better and worse days is very often in severe pain (the cancer has spread to his bones), is agitated, has swollen feet and lower legs, facial numbness and increasing periods of agitation and confusion. He is incredibly thin and frail after being a big man (in all senses) for his whole life. He often doesn't know where he is or why and wants to come home. He has incontinence problems so now has a catheter. He is often in so much distress that he literally doesn't know what to do with himself. He doesn't sleep through the night and is very restless, trying to get up to visit the toilet - despite the catheter. He's very emotional and cries constantly.

He has been very clear that he wants to be made more sleepy and comfortable but they have said they can't really do that, despite his agitation and wishes. He's now threatening to stop eating and drinking as it's the only way he can see of ending what undoubtedly feels like an absolute nightmare for him. We all know he's at the end of his life and it honestly does feel like we're prolonging his death at this point, not prolonging his life.

I honestly feel traumatised. He's only 60 and only has me and my DSis in his life to support him.

What do I do? Can I do anything? Has anyone been in a similar situation? I feel like I'm letting him down somehow.

I didn't want to read and run but sending love

So sorry to read this. My mum has terminal cancer and I'm dreading the inevitable increase in her pain. I'm really surprised they aren't able to review his pain medication to help make him more comfortable.

I’m so so sorry. 60 is so young, how heartbreaking it must be for you all. I have no experience with hospice care, but any of my friends parents at this stage were just made comfortable, I remember one friend saying a nurse said ‘there are no prescriptions in here’ and just gave her dad whatever he needed.
I really hope that the rest of his journey is peaceful and pain free.

I think they are wrong to refuse his wishes is that even allowed ?

If he would like more medication to relieve pain and to help him rest then he absolutely should be given it . Is there someone you can speak to a dr or manager at the hospice ?

So sorry you are going through this x

I am so sorry what a horrible time for you all.

Who have you asked about more medication? The hospice nurses and doctors should be trying to help ease/control symptoms including the distress you dad has.

www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/agitation

You need to speak to whoever is in charge and ask that they increase his pain relief. If they refuse to do that contact the local hospitals palliative care team and see what they can advise. If your df is near end of life there is no way he should be left in pain and the way he is, if that’s the case the hospice isn’t doing their job properly.

I’m so sorry you’re all going through this. I had this in 2019 with my Mum and it was so difficult.

No advice I'm sorry just wanted to say I'm so sorry you're all going through this. Surely the hospice have to respect your dads wishes within reason which this sounds perfectly reasonable to expect

I would be very direct - say that he appears to be suffering and what is the plan for dealing with that?

I would be expecting to see them start to increase his dose of midazolam or similar .

That's heartbreaking
Can you and your sister talk to a Doctor or Nurse at the hospice?

I think I’d ask for a second opinion OP. I agree with PP’s it seems very unfair to refuse to make him more comfortable. My Gran died at home after a AAA ruptured and she didn’t want to go to hospital. The district nurses apologised and said she could’ve had more morphine if she was in hospital than they weee allowed to give her. So I’m sure the hospice will be able to give sufficient doses of the meds he needs.

I didn’t want to read & run. I nursed my grandfather at home, he had lung cancer & in the end became very agitated. The district nurses came out & gave him injections for the agitation & to sedate him. He then went on to a continuous syringe driver to control pain, agitation & secretions. Only then was he peaceful, but also unresponsive & died 5 days later.

Is he on morphine? The doctor should be made aware of his condition and prescribed accordingly, although I'm sure they have to act within the law . A close family of mine had terminal cancer. She was only in the hospice r days before passing and she was heavily medicated with morphine which made her drowsy and not in too great pain xx

My mum died in a hospice from cancer in 2012.
She was agitated and suffering symptoms. She was given a syringe driver delivering morphine, anti sickness and some other drugs. She was a different person once getting that.
The last 6 hours of her life she became agitated so the dr gave her an injection and she gradually drifted away peacefully.
My mum had a good death, if that's the right phrase. Pain free. Peaceful.

Thankyou to everyone who responded.

They have said that they can't make him more sleepy because if they do he will be unable to eat or drink and they're unwilling to do that as it could hasten his death.

Should that matter at this point? Our focus is on his quality of life, not quantity. I just can't help but think we're getting this so wrong.

He is on Fentynyl patches and Lorazepam and Haloperidol so on some extremely heavy duty stuff now but still suffering with pain and agitation. The doctors haven't seen anything like it because his tolerance to the drugs is so high.

I'm no expert but when mum was in they weren't too concerned with eating, as long as she had fluids. Mum actually ate more once she had the syringe driver as she wasn't in pain etc.

Very sorry you and he are having to go through this. Can you explain to them that if they do not increase his pain medication, then he will refuse to eat or drink in order to hasten his own death, because he is in pain? Surely it's better that he is pain-free and not eating or drinking, rather than in pain and not eating or drinking?

Firstly I'm so sorry you are all going through this. But actually I did experience something very similar with my own dad when he was 61, who was also very distressed and in a lot of pain in his final days. Have they given him a syringe driver? This made a massive difference to my father whose cancer was also in his bones and he suffered enormous pain for nearly 2 years before he was given a syringe driver. Also don't be afraid to be direct with your palliative care team. Palliative care is designed to make people as comfortable as possible and you need to be clear with them that he is suffering and they need to get on top of his pain. The doctors could not believe how much pain medication my father required to be even moderately comfortable, but with us being vigilant about what he could have and when, and asking for help constantly, they did continue to up his meds. Have they been checking his calcium levels? My dad has many treatments for his high levels of calcium as it caused him to be very confused and agitated in his final weeks, again due to the bone mets I think. If the doctors are certain there is nothing more they can do (aside from pain management) then I am happy to answer any questions about what might happen next if that would be helpful.

Unfortunately despite our best efforts in palliative care, experience shows it can be very difficult to control some types of pain.
Its easy to say oh in this day and age no one should be in pain but sometimes nothing works as the body is not able to metabolize the drugs given... Some people also have a high tolerance and the drugs need to be titrated up gradually. Toxicity can also cause terrible agitation and confusion and more meds make this worse.

I am disappointed the hospice are not changing up his drugs, ie midazolam instead of lorazepam, morphine and levo etc. Terminal agitation should be medicated so if they are not doing this whats the point of being in the hospice? Ask to get him home with a package of care and district nurses input with marie curie to assist.

Blackisthecolour, My heart is breaking for you - my sister and I nursed my mum at home in her final days, she declined rapidly and died before Christmas and what you are describing is what we went through.
Similar to PP, Mum was put on a syringe driver delivering morphine and a sedative to combat agitation. The district nurses and GP who cared for her at home were very clear that Mum was receiving end of life palliative care and should never be in pain or distress and I would be speaking to your Dad's care team to adjust his meds. Your situation is different because he is conscious and still able to eat so I understand their reluctance to sedate him but really, as hard as it is, your Dad is at end of life and deserves to pass peacefully. Sending you strength to get through this, hope your sister helps and supports you as much as mine has x

I'm so sorry, OP. I went through it with my own Dad. They knew he was close to death but they wouldn't increase the drugs in case it killed him.
It was terrible, and frankly, inhumane

Keep pushing for your Dad and see if they can offer anything else for his palliative care. I pray for him to have a peaceful end.

I am so terribly sorry.

I have some limited experience of this as I was a carer for my grandmother when she had terminal cancer and, for what it might be worth, I found that hospice staff clung to any narrative that let them tick the boxes - and I don't mean that in a critical way. They just had to.

The worst part was when my grannie was still articulate enough to explain that she was in agony. I'm sorry to say, but when she was at the stage when she'd given up on trying to talk, they were much more ready to give pain relief. Is it possible for you to stop trying to reason with them, and simply to say he's in agony and needs relief?

I worked in a hospice for 15 years and we would not have left someone like this unsettled and agitated.
I would ask to speak to the ward manager.
There is no reason for someone to be left in pain and agitated- even small doses of drugs like midazalam can be effective in settling people.

I'm really sorry - we went through this with my DM. She had Hospice at Home care for her final weeks and the palliative nurse made it clear to us that DM would get as much pain relief as she wanted, with a driver installed for the last few days or so. I'm not a doctor but I honestly think when she had that constant drip of morphine, she was able to 'let go' and not fight the pain, and that allowed her to slip away. I can only agree with previous suggestions that you speak to the palliative care team and ask what the plan in place is - when will they give him a morphine driver? Who will decide when the end has started?

It is a horrible situation to be in. I can remember very vividly the scary feeling of being the one who had to step up and look after my DM when she couldn't speak herself; I was in my 40s, a capable adult, but I still felt disorientated and terrified by the responsibility. It's not something you can really prepare for, when it happens. All you can do is ask questions, try to get a sense of timelines and options, don't be afraid to push for more pain relief for him, or ask why he's not getting sedation, at least. I also pray your DF's last days are peaceful.

@Blackisthecolour sorry you are going through this, I really feel for you. My father is also terminally ill with lung cancer and mets. I think my dad only has a few weeks left and it is heartbreaking to watch.

My dad is planning to stay at home for end of life care. He's on oromorph, but not a syringe driver yet ....and no need for sedatives/anti anxiety or agitation meds so far....but I know this stage is fast approaching.

So it's mainly the GP in charge of my dads medication at the moment. The GP has said, do not be afraid of the oromorph, give him as much as he needs to have, so that he is not in pain. The most important thing is to keep the pain to a minimum. I know there is a fine balance between giving enough medication to control the pain and other symptoms.... but also trying to make sure they are not overly sedated and can still have some remaining quality of life/interactions with people they love. But, to be honest, from what you have said I think your dad needs more medication than he is getting.I'm so surprised that your dad's care team are prioritising him eating and drinking. Your dad is dying (like mine is), and his comfort is the only priority.

I was just wondering what the relationship is like between your father/you/your family and your father's GP? Could you phone or make an appointment with the GP to talk about this and then maybe the GP could liaise with the hospice team/advocate for your father and your family?